Just an update on Pomalidomide after first cycle. I have become extremely crabby as time has worn on, a mixture I think of the drug but also of the unremitting back pain which has finally worn my patience and tolerance out. It now just wants to make me cry, my patience and self-confidence have just gone as every movement brings pain and more…[Read more]

Hello Clara – I don't know very much about about Amyloidosis but I believe that there is a connection with Myeloma because this site embraces it with other inforrmation. Maybe a call to Ellen at MUK to get some further information would help. I also know that the main hopital specialising in this disease is the Royal Free in London. Have you…[Read more]

Hi Ron
Unfortunately we don't have a spell checker built into the site, although we have requested that one be added. If you are using a web browser other than Internet Explorer such as Safari on the Mac or Chrome you may get red underlines in misspelled words as these web browsers have automatic spell checkers built in. There is a free spell…[Read more]

Hi Keith
Sorry to here you've been having problems posting. I have raised the issue with our development team and hopefully they will have this fixed shortly. It's probably just a setting somewhere that needs changing to allow more time. If you have any more issues with the site please contact us directly at webteam@myeloma.org.uk. We can't…[Read more]

I have finally got my date for RT simulation for next Wednesday at my local hospital. However, they now think that the T6 fracture is an old injury so it is no longer quite so straight forward. Anyway hopefully we shall find out soon.

Hope you all have a good weekend. I can finally see daffs and snowdrops coming out. Is spring finally on…[Read more]

Dear Bridget – in answer to your question, totally fed up waiting to hear when I get the nod to start RT treatment. This is the problem with multi-hospital involvement and I hate it. Shall be on the phone tomorrow to get some answers.

My favoure Wallander has been with Krister Henrikksen. Kenneth Branagh's version just left me losing the…[Read more]

Love it David – thanks for a good laugh! Love, Gaye x

Thanks Min – I glanced at that one but gave it the cold shoulder. Tuesday night was just not the same – Holby having to settle in with new characters, Malik we learn is gay and Nurse Petrenko becomes an F1 doctor overnight and in the same ward. My favourite now is Sasha. I could fall in love with him! I am going through withdrawal symptoms…[Read more]

Dear Tina – yes we both sound in similar situations. I've just remembered that Patrick's consultant does not give him GCSFs hence his frequent hospital stays, so forget about stocking up on the injections!

I am wishing you both well and will keep you posted after my first check up at Barts on Monday.

Take care,
Love, Gaye x

Hello Sylvia – Thank you for your response to this thread and your lovely words. I somehow feel I can empathise with your situation because when I relapsed the first time I was just devastated. I had 18 months of remission first time round and then 1 year the second. Just when you feel your life is back on stream something else bites you on the…[Read more]

Dear Tina – thanks for your message and this is how Pomalidomide has been after 21 days. I am now on my free week as from today. I too take 40mg dex per week even in the free week. Because I have low platelet counts it was decided to stay away from any blood thinning tablets such as aspirin/warfarin etc. Pomalidomide also attacks the White…[Read more]

Dear Min – you can be excused for not joining us as yet another sado with a first class piece of evidence on your own behalf. I agree that watching Holby City does make you a sado and here too, along with Silent Witness, I must confess to being a double sado, so Tuesday is my evening of pure delight. After that it all goes downhill. Yes Holby…[Read more]

So girls, that was it as our heroic three walk off into the sunset will we ever see the likes of them again? Harry didn't take the job as his pent-up desire for wots-er-face is showing no signs of abating. It seems to be left open for us sados to start the Bring Back Silent Witness Campaign or walk off into the sunset with them and see if Harry…[Read more]

My consultant has suggested I might like to think of another kyphoplasty on my fractured/crushed T6. It would mean more travelling up to the Royal London where they do these ops but its effect would be much quicker than having RT. I shall discuss it with the consultant RT locally to see what he thinks. At least things are moving for which I am…[Read more]

I share all your concerns about GPs running the NHS budget but as I see it, it's rather like revamping the PCTs to be clinically led rather than by administrators as happens now. They will be consortiums of GPs, not packed full of them, so dissenting GPs do not have to sign up to become one of them, just reluctantly be part of the new…[Read more]

Yes Jean I think you are right about it being the last one. Two sad people together! I was so worried when Harry nearly snuffed it last week wondering how the programme could survive – now we know.

Oh dear ………………

Gaye xx

Dear Bridget – HAPPY BIRTHDAY our lovely Bridget! Well done on reaching 56. I am an Aquarian too – maybe that links our soppy senses of humour. You are a very special lady to all of us on here. Lovely humour and so much capacity to offer as much as you can to the rest of us. Thank you so much for that. Have a wonderful day hopefully with…[Read more]

Dear Tina – As you know I have long followed your shared journey and admire you both for how you have and are dealing with it. I know in the early days that Patrick used to post but it is lovely to have you do it now. You both inspired me to go for the pomalidomide and I am amazed that he still works despite the pain. Yes, he is a gem. What…[Read more]